She first noticed something wasn’t right at her 2003 wedding to Brad Paisley in Malibu.
Kimberly Williams-Paisley talks openly and honestly in her new book — Where the Light Gets In: Losing My Mother Only to Find Her Again — and remembers that her mother Linda had mispronounced Colossians when she was starting her reading at the ceremony. She said ’Colothians’ instead. And Williams-Paisley said she held her breath through the entire reading.
But that was just the beginning of more than a decade of decline. Linda Williams was diagnosed with primary progressive aphasia — a rare form of dementia — in 2005, when she was only 62.
Williams-Paisley describes that ongoing journey with her mother in the book and gave CMT.com the chance to ask questions about how she’s coping with the ways her mother’s illness affects the entire family, including her two sons Huck, 9, and Jasper, almost 7.
CMT: So it’s your wedding day, and before your mom even got to the mistake in the reading, you say in the book that she was crying because she felt left out. That sounds like it was so out of character for her. Did anyone else notice that that day, like Brad, your dad, or your siblings?
Williams-Paisley: Brad definitely noticed it. And so did my sister Ashley. It was one of those things we talked about later. But I never did talk about it with my mom. We all just said, “That was so weird and uncomfortable.” It didn’t taint the day, but it was one of those things that I looked back on, and I remember seeing her struggle.
It seems like your mom was not a huge Brad Paisley fan in the beginning. You tell a story in the book about going to see his Aunt Rita in West Virginia on Christmas. And your mom was visibly angry, and wouldn’t hug Brad goodbye, and you were mortified. But now you’ve been married for 13 years, so, she must like him by now. Right?
She did an about face. And I‘m so grateful she did. She embraced Brad and embraced our life after the wedding. She really did. That was a testament to who she has always been. She believes in marriage, and once we did it, she was like, “Well, all right.” She loves Brad.
You admit that now, nearly 11 years since her diagnosis, you’ve gradually lost sight of the mother you used to know. Is that still how you feel, or have you accepted what you refer to as New Mom?
I’ve accepted New Mom. Now I actually struggle remembering what she used to be like. Because it’s been so many years of watching her change that it’s hard to remember Old Mom when you see someone change so drastically over such a long period of time. I can’t recall her as easily as I used to. Sometimes I have to go look at old pictures. It brings me comfort now, though, imagining what she used to be like.
I love some of the ways you describe Old Mom: a woman who drank her bourbon on the rocks in a wine glass and a mother who was always your private applause section. I bet you miss her.
I do, but she is still alive in me and in the way I parent. I have been telling Huck and Jasper so many stories of what she used to be like. Like when there’s a storm and I’ll say, “Let’s watch the storm,” and they’ll say, “Nana would love this.” We think about her like that all the time.
Before your mom needed around-the-clock care, your farm in Tennessee — and the cabin your parents stayed in there — became kind of like a sanctuary for them. How did that make you feel having her so close by?
When she came to Tennessee, she really came with great joy and enthusiasm. We loved having them and they loved coming to the farm. My mom celebrated the people she got to know there, like Brad’s parents Doug and Sandy, and she loved where we lived. And by then, her inhibitions had started to go away. She became a lot more free in a lot of ways, which is one of the few blessings of dementia.
It must be so hard to watch her inability to understand what she didn’t understand. Like when she was writing down numbers but didn’t know what they meant. You wrote that her determination broke your heart. Was that because this disease is more determined than she will ever be?
Yes, because she was very determined to overcome this. She’d always been a hard worker. And she really believed that if she just worked hard enough, she could overcome it. That was heartbreaking to watch her struggle with that and know she was not going to beat it.
Toward the end of the book, you admit that your mom is more of a puzzle than when you started writing it. And then you say that Huck — who your mom embraced with an endearing show of humility and happiness — asked you how the book was going to end. Don’t you wish you knew what the future held for your mom?
I don’t know how the story will end, but it’s about learning to embrace the uncomfortable and the mystery and the not knowing and then just putting one foot in front of the other. That is all we can do right now.